Finally see the specialist

18.10.13  - Todays the day!

Arrived to my appointment at the Assisted Fertility Clinic to find DH in waiting room, he was early, I late, after getting my car stuck under a railway barrier arm (dont ask haha). We didnt have to wait long and a nurse led us round to a consulting room to wait. We were in there quite some time before Dr Tawfeek and my next med student arrived.

Was not a long appointment, he was on call so answered his phone a few times. He confirmed my unicornuate uterus, one fallopian tube, one possibly two ovaries and my missing kidney. He even drew me a diagram which I thought was sweet, however informed him of the excessive Googling i had done on myself haha.

Regarding my test results, he confirmed its highly unlikely I am ovulating, unsure if its the thyroid, weight, or the UU. Tube looks fine so if egg is present should be making it there. Sooo after talking about my diet, thyroid, plans etc it was decided that we would try the ovulation drug Clomid however  until i can get my BMI up to 20-22 (currently 19) and thyroid TSH level down (was 4.8) needs to be below 2.5, then I would not be able to start.

8.11.13 - Since appointment I have had a great result for my thyroid, its down to 1.4 so will remain on the 100 mg daily Mon-Fri and 50 mg daily Sat/Sun. Seen the dietician and have a diet plan to get that weight on, its tough as the Levothyroxine speeds up my metabolism so I have to pay attention to input/output.

Hope by Xmas ill have a few kgs on me so I can see the nurse at Chch Womens and get cracking.

Its going to be many months of drugs, blood tests and internal/external ultrasounds until we know if its working or not. Lets not waste any time.

My new nephew is due to be born this coming week, so im thinking all that time up at Chch Womens Neonatal ward will have me clucking all over the show.

Update again soon.

MRI again confirms it

17.09.13 - last MRI, I hope!

I arrived way early for my 8:15am appt, which is better than being late. The lady at reception said they may take me early and as luck would have it they did. I had a lovely young man that sat down with me and DH for a chat. He confirmed no IV dye or IV to stop my bowels from moving so they got me in early so we had a bit more time up our sleeve for some extra pics. Best thing about spending 30 mins in this machine was no gown...I got to stay mostly dressed so I was nice and warm, im ridiculously cold most of the time. Upon disembarking the lovely young men that photgraphed my insides confirm they got some great shots of my uterus. Nice work guys lol. 

So, I gave it a week then called my GP for the results...Yup! Its definitely a unicornuate uterus! But a decent size one? Lol. No rudimentary horn that they can see, so still no surgery on the table. Still big question mark on the right ovary, seems to be a now you see it now you dont situation. So all good news so far.... Fingers crossed it stays that way

Right now that those tests were done I called the outpatients at hospital to make sure they were aware and no, was still on wait status, that was promptly changed and lovely helpful lady went on hunt for my HSG results. She also put me on the cancellation list as with only 2 more monthly clinics to go this year It wasnt looking hopeful to see specialist until after Xmas.

Not even one week later my cell phone rang. 3 cancellations! Yipee! All booked in with GYN 10.30am Friday 11th October. This is it. Everything is about to get very real!

Update to come next week...with some answers...Eee im excited and scared at the same time.

MRI Pelvis, second and final?

Letter! Fantastic. Second MRI booked, this time they will be getting up close and personal with my uterus and uber kidney. Last MRI of bowel was inconclusive so this plus HSG will result in diagnosis and plan of attack, hopefully the specialist will see me now.

MRI Pelvis prep includes no eating and drinking 4 hours prior, a IV med to suppress bowel spasms (Buscopan) and an IV contrast dye called Gadolinium which highlights different tissue and blood vessels and aids diagnosis. That one gets flushed out by the kidneys so must check how uber kidney will cope with that, ill put it on the many consent forms I'm about to fill out.

Progress! Feeling great that things are happening, will call ChCh Women's Outpatients tomorrow as I'm curious once this test is complete how long ill have to wait again to see GYN.

Will update again once I get the results and pics, maybe its time to start an album? Lol.

Soy, coffee and Thyroid

Well, it turns out my TSH and Thyroid antibodies are at it again. Confusing as I have now been taking the Levothyroxine for 8 months now and they had dropped a few months back. TSH now seem to be outside the normal range confirm I have a propensity to primary hypothyroidism. Annoyed as my levels need to be 2 or lower to be safe for pregnancy as anything above that heightens my chance of miscarriage and preterm labour not to mention risks with fetal brain development. 

January: TSH 3.8 mlU/L

April: TSH 1.2 mlU/L

August: TSH 4.67 mlU/L

Also Antibodies results show they are also very strong, 90-100% of cases of Hashimotos Thyroiditis and Graves Disease show antibodies. Less than 10% of normal individuals have thyroid antibodies.

January: Anti-Tg (thyroglobulin) 241 mlU/L

August: Anti-Tg (thyroglobulin)  537 mlU/L

January: Anti-TPO (thyroid peroxidase) 244 mlU/L

August: Anti-TPO (thyroid peroxidase) 871 mlU/L

It turns out that consumption of soy products, so soy milk and coffee may be causing issues with my body's ability to absorb the thyroid medication so I've emailed my nurse and GP to see if I have to stop my morning coffee...nooooo! Its the only thing I'm allowed these days haha. So, all in all we may have found a very possible cause of current fertility issues, I may be seeing the thyroid specialist after all. Will wait and see.

Right, heard from my GP and it turns out she never got my blood results but has managed to track them down. Thyroid TSH levels definitely up due to antibodies so shes up'd my Levothyroxine meds to 100 mcg Monday-Friday and 50 mcg on the weekends. Have to do another set of bloods in 6 to 8 weeks to check again. Means we cant TTC while my levels are up so more waiting. Should have MRI done by then.

Wow! it's official.

16.08.13 - "X-ray Day"

Today was my Hysterosalpingogram (HSG). This was it, the X-ray that would tell all, even though I would finally know for sure this was also the test I was dreading however it sounded a whole lot worse than it actually was.

The day started with a phone call while I was getting ready, it was Cashmere Radiology ringing to advise they had a roster change so there would not be a woman available to do the procedure till the afternoon. I advised her that I was fine with a man and confirmed I would see them at 11.00am, DH looked a bit uncomfortable with that till I reminded him my surgeon would be a man also. DH was coming in with me for the procedure so that made him feel a bit better haha.

I took the whole day off work as they had advised there may be dye leakage, bleeding and abdominal cramping afterwards and was not keen to be at work for that, so DH took a half day too. He went to his lecture, got me a coffee from my fav cafe on way home to pick me up. I wanted to get there early, I like to be early to all my appointments, you feel alot calmer and prepared when you're not rushing around. They had a fantastic selection of mags, so chilled for 20 mins before they called me.

I was taken through to a room to get changed into my robe where she explained the procedure so I just nodded and smiled as I had done alot of reading up and was fully prepared, so no questions from me, apart from "do i need to take out my belly piercing?" lol.

Righto - it was go time, the moment we have all been waiting for! She took me through to the room with the giant Xray machine where DH and I waiting to meet the gentleman that would be doing my procedure. He immediately cracked a joke so that made me feel really comfortable. 

Up onto the X-ray table I went, the actual inserting of the speculum and catheter was no worse than a smear test, im not going to say it didnt hurt but i was surprised how little it actually did. Within seconds the dye was injected and he slid me up under the machine, he took one of me on my back, one on my left hand side and one on my right hand side and we were done. Couldnt believe how quick it was. He then slid over the telly and DH was ushered over to me to see the screen.

IT'S OFFICIAL ... I am 1 in 4000 born with a Unicornuate Uterus and I have just the one fallapion tube ... but its OPEN which means its not blocked... seeing the dye through the tube and spilling out into my abdomen was the BEST NEWS EVER!! 

 There is absolutely no sign on the X-ray of a Rudimentary Horn or right-hand side of my uterus that we can see, I think the next pelvic MRI I have may look more into that, heres hoping otherwise I could be looking at a laparoscopic investigation or hysteroscopy (http://www.oxfordclinic.co.nz/procedure-treatment/hysteroscopy) not keen on the idea of either of those.

So let's see what the specialist says, i'm feeling really happy with the news, I had psyched myself up for the bad news, so feeling very relieved as there is a really good chance we could conceive naturally, still early days, but some positive news.. Yay for me!!

Will post again when I get my MRI appointment.

Dr Libby Weaver Seminar

I had the pleasure of listening to a very well educated, positive, happy, healthy and empathetic woman tonight at a seminar I took my Mum and sister too thinking they would get more out of it than I would. 

http://www.drlibby.com/about-dr-libby/

I was very wrong and it just reinforced decisions I have made and am continuing to make. She has reminded me that my health and happiness should be my main focus as I face what the next years of my life have in store for me. Few books of hers to read to get the most out of her message, but will remember the W of her A-Z on Womens Health tonight.. "why do we do what we do when we know what we know"... This is going to help me make better choices tomorrow, then the day after that, it will all be about baby steps, in the hopes we will one day hear some in our home. 

The HSG (Hysterosalpingogram)

Got an appointment! Well got my letter re the appointment...This time at Xray Department at Princess Margaret Hospital. Will get to know all the Radiology Departments in Christchurch at this rate. 

I have to wait until my next cycle (expected Tue 6.08) and phone to book the test for day 5-10 which is the best time to get the best result.

This is an important test for me - this will confirm my UU, my rudimentary horn or not and also check status of my left fallopian tube.

Here is a brief synopsis of what the test involves:

A hysterosalpingogram is an X-ray of the uterus and fallopian tubes which allows visualisation of the inside of the uterus and tubes. The picture will reveal any abnormalities of the uterus as well as tubal problems such as blockage and dilation (hydrosalpinx). 
If the tubes are not blocked by scar tissue or adhesions, the dye will flow into the abdominal cavity. This is a good sign but it does not guarantee that the tubes will function normally. It does give a rough estimate of the quality of the tubal structure and the status of the tubal lining. Some cases where the tubes appear to be blocked where they join the uterus, may in fact be normal. Often blockage at this location may be due to spasm of the opening from the uterus into the tube or from accumulated debris and mucus blocking the opening. This can be managed by passing a very thin catheter into the fallopian tube either at the time of hysterosalpingogram or during a hysteroscopic procedure.
A hysterosalpingogram may also indicate endometrial polyps, submucus fibroids, intrauterine adhesions (synechia), uterine and vaginal septa uterine cavity abnormalities, or the after-effect of genital tuberculosis. The hysterosalpingogram may or may not be able to detect pelvic adhesions, mild hydrosalpinx, small polyps, endometriosis, tubal phimosis (clubbing of the fimbria at the end of the tube), or immotility of the tube. Other tests, such as hysteroscopy saline sonohysterography or laparoscopy may be necessary to accurately evaluate your uterus.
Although the purpose of the hysterosalpingogram is not therapeutic, sometimes forcing dye through the tube will dislodge any material which blocks it. A number of women have become pregnant following a hysterosalpingogram without further treatment.
Generally there is no special preparation needed for this test. However, depending upon your diagnosis, you may need to take antibiotics to guard against possible infection. To ensure that you are not pregnant, the study is done between Day 7 and 10 of your cycle. Prior to the procedure you may take an anti-inflammatory medication (Aleve or Motrin). A small catheter is placed into the cervix and the dye is injected. You may feel heavy cramping during, and for several hours following this procedure. 
Cool - sounds like heaps of fun! Im strangely looking forward to it tho, will know once and for all!
Will update again once I've been :-)

Next stop, Christchurch Womens Hospital

So it's been 7 months, not much to report until today hence no posts, also I was starting to get impatient and you didn't want to hear all about that. Checking the mailbox every single day for my appointment letter was frustrating for both me an DH...Im a lucky girl for getting an appointment so soon tho, going public can be a nightmare.

26.07.13 - Appointment at the Assisted Conception Clinic, Christchurch Womens.

I was very nervous, not sure why, maybe its because i didnt want bad news, or maybe its because I didnt know what to expect today. Was also pretty excited something was finally happening!

Got to appt. early so they took me straight away. Nurse did my height and weight, only just scrapped through with the BMI and she made a point of saying so. Ive been trying really hard to keep on the weight. Apparently she also sniffed me she told me later, haha, apparently lots of people must lie about being smokers, lucky i quit 10 years ago isn't it.

I gave her my giant folder of scan results, radiologist reports and blood test results and she disappeared to find the specialist to go over my notes, we waited very patiently while they read over my mountain of notes and prepared their list of questions for me.

Finally i met the registrar and her medical student (I have a feeling im going to be a case study for a lot of the Uni of Otago students) so will meet lots of people by the end of this journey. I was so nervous I cant remember either of their names tho! Whoops.

So the questions begin. We talk about my periods, my bowels, my diet, my bladder, my thyroid, my uterus, my blood test results and other past health issues which all sum up why I was there to see her today. By the time we have finished talking they give me 'the pity look' which I now get alot and they have surely worked out that Im going to be quite a complex case. That can either be a good thing (if my surgeon likes a challenge) or bad if all of those above will mean we have a snowballs chance of growing our family and assisted fertility is not an option.

Sooo...the long and the short of it is I need to now go for a more detailed MRI of my pelvis to ascertain if I do infact have UU, find the ovaries, the one fallopian tube, make sure its not scared and blocked, see if there a rudimentary right horn that needs to be surgically removed. I will also be getting an HSG of my uterus, which i knew i would need so thats ok, (http://en.wikipedia.org/wiki/Hysterosalpingography) to give them more information on the shape and volume. My kidney function is being retested via the bloods I did today to see if I need to see the kidney specialist, my thyroid TSH levels are being retested for fertility and my notes will be sent to the Thyroid Specialist at Public to look over. In the next week or so ill be doing another 21 day blood test to see if my Progesterone levels have improved as they we very low and weren't looking good for ovulation back in January.

There has also been one more outcome from today - my registrar and I started talking about pain, if I had any with periods, whether or not I could have PCOS or Endo and we ended up talking about Kidney and Bladder infections as I will need to be especially careful with my Hypertrophic Kidney now, so mentioned to her that I've been tested several times over past 3 years for UTIs which came back all negative, she thinks I may have a type of Cystitis which is closely linked with IBS. Brilliant as I had already self diagnosed on google haha so we'll look into that eventually too. https://en.wikipedia.org/wiki/Interstitial_cystitis.

To conclude our next steps will be, more waiting, more tests, more procedures, more eating and weight gain, more exercise and sleeping and less stressing. Good things come to those that wait and stay positive :-) I don't get to meet my Surgeon/FertilitySpecialist until all results are in so he knows what steps to take next. He sounds very experienced so looking forward to meeting him.

Will update again when I get my next appointment. Hopefully soon.

So where did it all begin?

The story begins ... my DH (darling husband) and I were talking about trying to finally start a family. We have been together 10 years now and no luck so far. Where do we start?... oh that's right, my bowels.

After years (and by years I mean many many years) of battling with issues with chronic constipation I went back to my bowel specialist to see if we could find a new plan of attack to get myself as well as we could before pregnancy... I was starting to really have issues with not being able to poop properly. Another colonoscopy, a new diet perhaps? Brief appt, we had a good chat, talked about what some of the problems could be and that is where I met the FODMAP's diet for the first time. She sent me off with a pile of papers to read, a box of daily suppositories and a Blood Test and told me we would speak again in 6 weeks. So on top of quitting drinking (which was one of the best decisions I ever made mind you) I had to quit many foods...which for me has been the hardest things to give up... apricots, nectarines, mushrooms, onions, avocado, everything gluten free, lactose free... it was hard, but I did it as I was determined to find a solution.

Bloods came back ok... no Crohns and no Celiacs... thank Christ! Both are in my family (along with auto immune conditions in both parents and both grandmothers), so dodged that bullet for sure. I did however have low thyroid levels T4 of 4.3... so off to the GP I went.

GP visit - I had signed up with a local doctor down the road so was a first time visit. Really lucky to find her as she has experience as a OB/GYN. She was lovely...she read my file, I filled her in on all my tests etc and we talked about fertility testing as if DH and I were going to try and conceive this year as planned. So off for more Blood Tests I went.

Things were really improving, but not fixed, was still needing to use the suppositories every day. By this stage I had started to shed weight (got down to about 49kgs and have lost a total of 16kgs to date), people were starting to comment all the time on my appearance and I was really starting to feel sorry for myself... so I phoned in to talk to my specialist just before Xmas and she had gone on leave. Bummer. What do I do now? So her nurse phoned her for me. She was concerned that I was still having issues and the diet had not helped with that so she referred me for a Pelvic MRI. That would mean we would finally get to the bottom of it (excuse the pun). If something was really wrong did I want to know? Nervous! So I phoned and booked it... one weeks time! Wow that was fast and 5 days before Xmas. Progress.

Thursday 20.12.12 - Pelvic MRI day. appointment time 7.50am. Before work? what was I thinking? The nurse came and sat with me to go over the procedure. She explained what we were doing what they call a functional MRI...you don't really want all the details but she seemed to be more nervous than I was. 30 minutes later we were done! The machine wasn't as claustrophobic and loud as everyone said it was. Piece of cake! done worse things in my life. My super worried husband was waiting right outside and quickly whisked me away for a soy flat white before work began at 8.30am. Done... now the wait begins! Gotta get through Xmas without worrying about it and then will get my results in the NY.

Happy New Year! - Xmas and New Year went great, still sober, still eating nuts and berries and managed to lose 2 kgs over that time... WTF? unheard of. Working has been helping take my mind off things. Starting to get nervous about all the tests coming up.

Monday 7.01.13 - Wedding Anniversary! 7 happy years. That was the day I got the phone call at work in the morning about my results. Tests showed my thyroid levels had got better with a T4 at 3.8 but I tested positive for Thyroid Antibodies and would eventually develop full blown Hypothyroidism. So we decided taking the Thyroid medication would be the best thing going forward to help with fertility, and also the constipation. That news I could handle, it was when she told me that I had elevated Prolactin levels that might be caused my a tumour on my Pituitary Gland in the base of my brain that my heart kinda stopped beating for a minute... WTF? She assured me that these tests sometimes give false readings and she would send me for a retest at my 21 day fertility blood test... that was weeks away! she told me she would leave a script and blood test form at the front counter for me to pick up. DH was still on holiday so swooped in and collected for me, then collected me from work. He handed me the envelope in the car which i opened and sure enough there was a wad of paperwork for the lab, but there was a another Radiology referral, what what that for? why do i need an Ultrasound, I have just had an MRI? It was then that I read the GPs letter she had enclosed.

Something along the lines of.... "the other thing I forgot to say was that your MRI organised by Dr Ross suggested you might have an unusual shaped uterus and we should look at this more closely with an ultrasound scan".  The referral said to investigate for a Unicornuate Uterus... what the hell was that?? I did what any IT geek would do and I googled it. Wrong thing to do! Stayed up late searching all the links I could find. What did it mean?

Unicornuate Uterus (UU) - It meant I was born with 1/2 a Uterus with possibly the other half being there but being undeveloped or not there at all. It meant it was incredibly rare, only 1/4000 people are born like this, it meant that I had 65% of only having one Kidney as they grow as the same time. It meant it was going to be really hard for us to conceive let alone carry a baby to full term, only 50% of studies delivered live babies, there were breech babies, ectopic pregnancies, C sections and a foetal death rate of 10%. http://en.wikipedia.org/wiki/Unicornuate_uterus

Devastated? Not really. I don't think at that stage I was allowing myself to be. I live my life by a  few simple words. "Nothings a problem till you make it one". I had my Bowel Surgeons appointment the next day, so after spending half the night on the phone filling my mother in an googling myself senseless. I just went to bed.

Tuesday 8.01.13 - Surgeons appt today and MRI results. Nervous much? Work as normal. Husband was still on holiday so was happy to come to appt today. Surgeon was a lovely man,  We talked a little about my UU (he had also seen the MRI) and he asked me to stop calling it 'Half a Uterus'. That made me giggle. Once he had all the info on my bowel movements or lack thereof he wanted to show me the MRI results and what they had found. I had what they called a small Rectocele http://en.wikipedia.org/wiki/Rectocele. A small tear in the lining between my rectum and vagina. This I had been prepared for as that was the reason for the MRI in the first place. One thing him and his colleague did find had maybe caused this issue was that my rectum was alot more forward than it should be and the direction of it cause be causing me some issues. Finally some answers. Something else that didn't form right in the womb! I'm one lucky girl this week! He concluded by telling me there was no way to fix this via surgery and we would just carry on with the Dietitian, suppositories and I would need $2k worth of physio with a specialist to improve my muscle function in that area from all the damage caused my chronic constipation. So off home I went to digest that information, reassess the budget and take my meds.

Saturday 12.01.13 - Pelvic Ultrasound day. appointment time 8.50am, nice and early! The young girl that did my ultrasound had only been doing it for 1 year and this was her first UU,  lucky thing! Again she seemed more nervous than I was. I was mentally prepared this time... and had all the facts, this time I would be able to 'see' what was on the screen. I was really hoping that my first U/S would eventually be to see Baby Robertson not investigate a rare congenital malformation. And we began. Couldn't really tell what we were looking at but was sure we found a Banana shaped uterus looking thing on my left side... that must be it? She didn't say. I left her to it as it looked like she was really concentrating. Then it came time for my kidneys. She started on my right side... scanned...scanned...scanned some more.. I couldn't see one! As i was not a qualified Radiologist... i said nothing but waited. She asked me to roll more on my side so she could come in from the back (just in case it was hiding)... but then she spoke. "I'm having trouble locating your Right Kidney...im not sure there is one there. The one on your Left Side is enlarged (http://en.wikipedia.org/wiki/Hypertrophy). I knew it!! I was one of the 65%! DH looked at me stunned, I told him that if I was going to rock a birth defect I would do it properly. For some reason I was still not feeling devastated. I now have two congenital Malformations... Unicornuate Uterus with Renal Agenesis... at 32 years of age! How have we never ever picked this up? Stunned. Off we went to spend the day in Amberley explained all of this to my in laws and let them know we were in for a challenge conceiving their grand babies.. and we planted some trees, was actually quite theraputic!

Monday 14.01.13 - GP called. Again early before work. Those were some serious U/S results to come into on a Monday morning. Hope she had a coffee first! She confirmed that I had a Left Unicornuate Uterus with the possibility of only a Right Ovary and no Right Kidney. She sounded shocked. I pretty much said "sweet as" what shall we do next? Forgetting that we still had to wait for my next lot of Bloods for the Pit. Gland results as I still might have a Benign Tumour to add to that list next (http://en.wikipedia.org/wiki/Pituitary_adenoma)! In the meantime we were to organise sperm samples as once all the results were in she would need to refer me to a Fertility Specialist/Gynaecologist at the Hospital. Pleeease don't let that be a long waiting list! We cant afford to go private :-(

Tuesday 22.01.13 - Next Blood Test... Day 21 Fertility Test, Prolactin Level Test and Kidney Function Test - update to come

Thursday 24.01.13 - Results are in! GP range this morning...Prolactin levels are back to normal, so not Pituitary tumour - yay me! Phew... feeling a little less stressed now. Uber Kidney also looks to be functioning ok, Potassium and Sodium levels within normal range. Should be getting annual tests now to check it out. GP also confirmed thats shes pretty sure I ovulated... go left ovary go! Finally some positive news. So, what next? DH off to get his junk tested this week and GP is prepping a letter of refferal to FS/GYN. We are having to go public so here is hoping the waiting list isnt tooo long! lucky im a patient person.

So now you have the jist of where we are at. Next stop Fertility Specialist. We would like to share this next journey with you, good news and bad news will be published. We hope that this blog will help other like the UU blogs i have read have helped me, so many positive outcomes, it keeps me hopeful.

Next update will be in a week or so...until then.